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November 25, 2008

The Time

I had to go through some old photos on my computer yesterday and felt my heart quicken as I neared The Time- as in The Time when I might come across a photo of Noah when he was at his worst.

We didn’t take many pictures then, but it was during Christmas of 2003 and a family wedding, so pictures are going to be taken. I was nervous to look. Like, I was pretty sure I hadn’t saved any bad reminders of him in his helmet or all drugged up. But there they were- photos of him at his birthday party. Dancing at the wedding. On his first airplane ride. All during The Time.

I don’t know what I really feel. Not really a sadness. Maybe a numbness. And confusion. Like that child in the photos isn’t Noah. That was probably the most heartbreaking thing about his Epilepsy, that it wasn’t him. You would look in his eyes and wonder where he went. And would he ever come back? No one could give us that answer. Especially not him.

So, I look at these photos of him in a helmet and remember the stares we’d get at the grocery store and how I was too tired and grieved to even care. And how much I hated looking at that blue thing with the rainbow strap, period.

I remember after he started the diet and we finally felt ok to let him go more & more without it. Like taking the training wheels off, we stepped out in faith hoping an attack wouldn’t sneak in and make us put it back on. And I remember wanting to burn it when we knew he was all better. But it had protected him. And we wanted it to help someone else, so we gave it to another family that couldn’t afford one.

There are days I don’t want to have to tell his story anymore. It’s not him. He’s a regular boy now, seizures far, far, very far behind him, I pray. We could so easily block out The Time and move on with our lives. But hearing our story, for some parents, is the only hope they have to hold on to. To know it is possible to get your child back.

And we want our story, like that dang helmet, to help someone else. We share it for free to anyone that will hear. We lived That Time. Can’t take it back. But we can go on living and enjoying The Now, the time we now create with every new day.

Noah’s story is featured in the May issue of NWIparent: "Gut Reactions " and you can also read more of the story here .

I always seem to leave your blog wanting to go hug my children --- maybe this is why I never get to time to blog -- I am going to have to start reading yours last!!

Thank you so much for sharing, the power of 'story' telling is so wonderful and supportive for so many. I can not imagine what you have had to go through and I am in awh of your brave attitude to share!

Stephanie, thank you for sharing this again. We are still in the limbo stage of waiting to hear back about a test the hospital did on our baby last week. I'm due to deliver him in 7-9 weeks (depending on who's counting). We've been experiencing really odd movement that we knew for sure wasn't hiccups or anything like that. Our doc consulted with an OB (that's what they do in Canada), and he said that though seizures are totally rare, it was good to check it out. So now we wait.

As I've been reading and researching, it's dawned on me that the test they ran probably won't give us any answers. And our only answers will come after our baby gets here. So the next 7-9 weeks are boot camp on learning how to hold our baby with an open hand, trust God, and simply take our worries and hopes to Him a lot.

The one thing that gave me a glimmer of hope, should this actually turn out to be our story, was your story. I knew that perhaps, once this baby is big enough to try that special diet, that you could help direct us to the right book or expert who could teach us how to follow it.

To be honest, we're asking our families and friends to pray that these aren't seizures, and if they are that they stop and there is no damage from them. That's my hope and prayer.

But I'm still really glad you are out there, available, and willing to share your story even though it is so painful.

I think you have an incredible story and I know what it's like to not want to relive the pain. But God told me that He didn't take me through the fire and have His son die on the cross to heal my burns and my wounds for nothing! Our stories are meant to be shared. Why? To prove that God is still alive and still working miracles!

God is holding your hand and each time your story is told, He is blessing you.

Aiden had a seizure one night at the hospital due to a high fever. It was the scariest moment of my entire life. I couldn't imagine wondering every day if it was going to happen again. I still freak when does have a fever. you are a strong women. keep your story going!

What a beautiful story...Beautiful in the sense that you have come so far! God bless you and your family for having faith and allowing him to show you the way, one baby step at a time.

And what a great thing it was for you to help another family going through the same grief by offering the helmet to them. I only hope that they saw a glimmer of hope for themselves through your story of Noah.

His story is so amazing. God is so good! I can only imagine what a difficult time that was for you and your family...

On another note, I just overhead a coworker in my office talk about a friend that had three small children and said, "Talk about adventures in babywearing!" - and of course, I thought of you! A new phrase has been coined :)

Your family's story is amazing and nothing short of miraculous. I hope you will have the strength to keep telling it for years to come - and someday Noah himself will be able to give voice to it, as well.

As it says in Ecclesiastes 3, there is a "time" for everything, and praise God that "time" is past! Glad He carried your family and Noah through it and was able to show you a another rainbow on the other side!

Oh, I praise God every day for Noah's healing. He looks like he is reaching for the stars in that last picture. God has big things in store for him. Those are the sweetest pictures. His story has helped so many people.

Thank you for sharing your story. It's powerful even for people who aren't going through that specific situation. You witnessed God at work against medical odds. That's amazing! I can't imagine how painful it must have been for you. However, I can see how God is using your voice on the internet and I believe you're reaching people that nobody else can because you're willing to share this story.

Oh, Stephanie, thank you for posting this. I don't think I'd even discovered your blog yet when you originally wrote this, but I feel as though you wrote it just for me. It brought tears to my eyes. I pray that we will see a seizure-free day for Jade someday not too long from now. Thank you so much for your beautiful big heart.

My sister has epilepsy but wasn't diagnosed until high school... She still struggles on a daily basis, raising her 2 kids while managing her medications. Bruises in odd spots from various falls are not uncommon on her poor body. Epilepsy is a horrid, horrid affliction.

I can understand the fear you experienced being around epilepsy, but not as a mother of a child with it. Every time I read of Noah's recovery, I hold out hope that there may be an answer for my own sister....